I have done 5 marathons now and if you have ever done one you know how your body just craves rest afterward. Well, unfortunately I don't get to do that. I just finished the Bayshore marathon in May and now I am staring at another 18 weeks of training. It looks daunting! As daunting as the thought of running 26.2 miles sounds to a non-runner. I mean I just completed this process and now I have to do it all AGAIN!?!
The speed work and the hills are tough but the long runs are mentally tough. So I started out slow and easy Monday morning going 10 at a nice easy pace. Since I got calf cramps in past marathons including Bayshore I want to specifically address that issue so I am wearing some compression socks I got from the hospital after my most recent surgery. I have no idea why I kept them but now I am glad I did. You can buy some calf sleeves they're called but I wanted to do a little test first. So I took off for my first 10 mile run in what felt like pantyhose. I saw a friend of mine 5 miles in and much to my surprise she didn't laugh or even comment on them, not that I would have cared, I had just finished a very hilly stretch and was glad to be going downhill finally. First 10 miler in the books.
I was asked this week if my kids had dystonia. That was an issue for us, especially since my wife also has dystonia. My thoughts on this are: since I have primary dystonia and she has secondary dystonia it would be the same odds as me having kids with any "normal" woman (the quotes purely hypothetical since I know there is such thing as a normal woman! kidding, Robyn, what are you doing with that . . . OUCH!) Where was I, oh yeah, her reply is if they get dystonia who better to know how to help them deal with it than 2 parents with it also. As yuo can tell my wife is way smarter and deeper than me. (or is it I?) To answer the question - no. They are 4 and 6 now and show no signs of any dystonia yet. And believe me I look and I am sure Robyn does as the same. Every once in a while I will watch them closely to see if notice any hint that they might. For instance, when I was 6 I had the hiccups much more than other kids and when I was cold I would shiver to the point my teeth would chatter.
Quote of the day: "Live as if you'll die tomorrow, learn is if you'll live forever." - Gandhi
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Dystonia Medical Research Foundation
My Story
Most of it contained in the blog somewhere but I will summarize here: I started to notice symptoms during my freshman year of college. They were subtle little hints like I was more difficult to chew and had some twitching in my face. And when I got nervous my voice would become very tight and strained, this was true from middle school but was getting worse. By the end of my sophomore year I knew something was physically wrong, it was nothing mental.
I was luckily diagnosed very quickly compared with most dystonia patients around 1990. I quickly sought treatment, and quickly ran throuh the numerous meds I had tried, Botox was used but I became immune, surgery was done in 1995 which helped my pain greatly but didn't do anything for the voice.
In 1999 I went to NYC, to a doctor I considered the finest mind in the dystonia field at the time, and he suggested an experimental study they were doing called Deep Brain Stimulation (DBS). This was the first I had heard about DBS, I went back to my aunts house in NJ and thought about it for a few days and decided against it at the time. I still think it was the correct decision but I also made a wrong decision out of desperation during that visit. Instead of waiting for them to improve the DBS technology I opted for a palidotomy, which permently alters the brain. The surgery left my speech garbled instead of breathy when I went in.
I was now following the progress of DBS and checked it out in Chicago in 2001, decided to hold off a litle longer. In 2004 I went back to Chicago and opted for the surgery at this time, fully aware the affects on the voice were really an X factor, but likely no change. I had the surgery done but the DBS had yet to be turned on, that came a month later. So I laughed when people said I looked better during the first month! After a month passed and my body adjusted to the new hardware I had installed it was turned on and the facial spasms started going away with each fine tuning that came once a month.
I love to talk to dystonia patients (the nicest people on the planet, not quite sure why that is - maybe it is the empathy that comes with realizing you have to live with dystonia.) Feel free to email me at Brianst@sbcglobal.net.
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About Me
- Accidental Hero
- Brian is running on behalf of the Dystonia Medical Research Foundation (DMRF) in the 2009 Bank of America Chicago Marathon. This blog chronicles his training efforts.
You posted hiccups and shivering, are these signs. I'v just recently been diagnosed with cervical dystonia and am searching for answers.
ReplyDeleteThanks,
Keke
I never had hiccups but as I recall back in the 5th grade in 1979, it was kind of a cool rainy day and we had a track meet (this was when I was 'normal') and afterwards I remember now being very cold and shivering to the point my teeth were chattering. One of the mothers kind of held me w/ her arm around her. I went back to finish the rest of the school day. It was May so we had an end of year party at Skateland. Then we went to Hardees for lunch. Then I went to my friends house to play basketball. So before all this happened, I was fairly active - sang in choir etc. I went home as I didn't feel well. My mom gave me two aspirins and off to bed I went. We just thought I was overly exhausted. By morning i had totally changed. My speech was kind of sing-song as my dad describes it. From that point on I was in and out of hospitals. Receiving PT OT & Speech Therapy all throughout HS. Nobody knew for sure what it was until 18 years later when I met a terrific neuroligist whom I had for 12 years and she diagnosed me w/ dystonia.
ReplyDeleteSo do you or your wife have a speech impediment? It is difficult for me to speak and have other understand me. I have one friend hwo understands pretty much everything. Sometimes he gets stuck and I end up spelling out the word.
Keep on keeping on.